Tag: writing

A trip of infinite sadness and regret

I’ve been sorting through index cards, rogue pieces of paper and old photos because I’m moving. Moving out of the city, and returning to the trees and all of the secrets they’re waiting to tell me. They’ve been calling me for a while, and it’s time. I’ve become weary of city living over the last couple of years, and the more time I spend at the farm, in the bush or up in the mountains, the more I yearn to be in silence, amongst the trees and the stars, harvesting bush lemons, herbs and having a veggie garden with a couple of rescue chooks. Maybe even a rescue dog one day.

People ask me if I’ll miss living so close to the city. No. And yes. I won’t miss the sirens and incessant traffic, the dust, the cranes, or the crimes against architecture which seem to spring up while I am sleeping. I will miss the sunsets out to the west, watching the lights come alive in the Gotham City building, my many murders of crows, and the kookaburras, rainbow lorikeets and magpies that gaggle in the trees every afternoon. Perhaps they might like to follow me if I ask them? I suspect that there are going to be many murders of birds and other wildlife where I’m going.

There are people I’m going to miss, but I can visit them, and they can come by any time. It’s just that it’s time for me to move on, and when an almost inconceivable opportunity presented itself, I leapt. It was a quick decision, but most of all, it was an easy decision (which are the best kinds of decisions).

I’ve started packing, and that’s where I found a bundle of index cards and rusty paperclips from a couple of my trips out to Barcaldine – another place that calls me, and one I hope to see later in the year. Below is some writing from 2001 and 2002 – long before I’d found my writing voice (I’m still finding it) – and it’s about my time at Cumberland, the cattle property where my dear friend Meagan grew up. Meags died in May 1999, and I have mourned the shit out of her. You cannot imagine. Or maybe you can. Grief is one cruel mistress.

In 2001, I finally got out to her family’s cattle station to see where Meags had spent so much of her life; a place she had wanted me to visit when we were both well enough. But that wasn’t to be after Meags died in May 1999 from Cystic Fibrosis – the illness we were both born with. The last time I went out was in 2013 when I was addicted to opioids. A part of the reason why I decided to get clean was because I was alive, and Meags was not. I realised that I needed to recalibrate my compass, so that’s exactly what I did. I daresay the next trip will be very different.

An infinite trip of sadness and regret

Thursday 9th November, 2001

Stock and forty degree anarchy

Here I am at Cumberland, wrestling with hollow hope that the clouds, thick and full of promise, might crack open and give me a belated baptism. Blue funny faces remedy the forty-three degree fever for one quick minute, the coloured ice glossing my lips until I’m a pale shade of cyanosis. Swigging down coffee doesn’t sit well with the melting barbs of ice in my throat; my teeth frozen in a futile resolution to my thirst.

Frogs croak with my hot feet moving across the floorboards, so I walk outside and sing to them. I sing to them that we are missing the rain, too. Cumberland and surrounding properties are still on town water for now, but for how much longer we do not know. We do runs around the paddocks dropping off licks for the cattle, making sure they have enough water, the grass and wayward sticks whacking the ute. I wonder if the stock will be here when visit next. The cattle aren’t fat by any means, and look like the animal kingdom’s walking dead.

A palomino dropped dead yesterday afternoon from colic. The mare had been sick for days, splayed on her side to draw out the pain, her gut distended as though she was ready to foal. Just before Kerry went to get the shotgun, she got to her feet, hobbled over to the fence, and dropped to her death in the dirt.

The stock will not die from colic. Instead, they will starve and thirst until rib cages protrude through paper thin hides; craggy, matted hair shrouding more bones and bleeding skin.

I try to write and I sit under the weeping willow waiting for the words to come, but they do not. The arbour is green, and it grows grapes, although I don’t know how productive it is. It looks like a green and twig laden blanket, covering wire and wood, and it moves me with the breezes that roll through the garden.

A hot, bullying wind has risen, and the sky has swollen with charcoal coloured nebula – clumps of hope just out of reach from where we stand sentinel on the prickly grass. I’ve never felt rain on my skin out here, and doubt I ever will. At night, I dream of pellets of rain popping on my skin, and me – coming alive in the mud as the water volleys against the dry earth.

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In the city, I’m in limbo. I feel shackled and ambushed. Out here, I am free. I eat cheese and tomato jaffles and icy poles, drink hot coffee and cold beer – all the while looking at coloured vignettes of Meagan, her eyes like chocolate discs swimming on her face – her blonde hair swathing her young neck, olive and soft.

I feel a sense of permanence here. Something like belonging. I don’t know why I come here. It could be to be close to Meagan – to sit at her grave and memorial garden in silence. It could be to air my regret at not seeing her the day before she died. It could be to tell her what’s been happening – we always loved hearing about the other was up to. What adventures we’d found, what adventures had found us.

Or it could be so I can remember her, and to read those words on her epitaph – ‘Rest, little one, rest.’

Wednesday 2nd October, 2002

I woke late in the night and had a skirmish with what looked like a bird eating spider above my bed. After I’d half-killed it, it showered me with its babies. I trundled off to the shower thinking that it never feels right killing a sentient being.

In the morning, Sue still had the bread out on the table and the kettle and been boiled. The Walker’s had an ironic thirst for coffee. Ironic, purely because they can drink several cups of the stuff in forty-seven degree heat. The office and the bedrooms are air conditioned, and Jay had said year after year that he’d have the whole house cooled. ‘Maybe next year,’ Sue said last night.

Today had been no different after looking at the weather station that had been Jay’s grandfathers – the arrow pointing at ‘dry’, with the temperature stuck on forty-one.

In the afternoon, we transplanted two trees. The first one looked like it had more guts to it – fatter trunk, leaves more evenly splayed with plump branches, and not on too much of a lean. The other was brittle and grey like a ghost gum, its threadbare leaves devoid of a middle vein running through the ashen foliage. It didn’t have much spirit about it.

And so, today was the tale of the two trees. Kerry dug them out from the old station hand’s quarters where the grand bull ring once stood, the excavator bouncing around like a feather on the wind. His kids visiting from Warwick looked on as their Dad tried to uproot the trees as gently as one can with an excavator, and one by one they sprung up and out of the earth, averse to being torn away from their tree family. Kerry drove them back to the homestead, and gently set them down into where he had scooped out the dirt – Katrina pointing her freckled hand at where they needed to be. She had left a hose in each to saturate the soil, and when both were in, we watered them for another half an hour, and soon enough the weakling was on a lean.

Jay poured a rum for himself and a wine for Sue. Katrina and I had a beer each, our eyes mulling over the flat plains as the sun dropped behind the spine of the mountains far away.

Jay, a man of few words, looked over at the trees and said something about ‘waiting and seeing’. This day, like every other day, had carried with it thoughts of his daughter who didn’t survive, then he looked to the girl who did, with a lopsided grin. Me, a bottle of beer in my hand, lost in the stars of an inky sky that will always lead us home.

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The places I go …

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It is akin to a dream, this dense clump of trees unfolding before me, reaching sharply into the sky. As I walk through the forest under canopies of palms and eucalypts and a discord of screaming birds, my feet arrive at a bog. I’m at the lip of a lake I cannot reach for the rain that has distended the ground. Perhaps Jacky can take me tomorrow so I can see where it splits from the earth and drops away.

There is life above, around and below me. The swollen ground silently objects under my boots and as I lift my feet, it plumps up like a pudding.

The air is slow and dense from woodsmoke, and it anchors me to the moment. I crush leaves between my fingers; that stain of scent not leaving the folds of my hands until I bathe later that evening.

With the sun caught in the canopies – splintering shadows onto the ground as though they are dancing a jive – the screech of a cockatoo and flurries of parrots embroider the Piccabeen palms. Their silver mottled skins are grooved with what looks like inverted feathers, as though someone has taken the time to stencil each one.

Early evening yields to the call of the kookaburra, cackling at our stupidity and the irksome way we do not love them every minute of every day.

Diamonds scuttle across the water as the day reaches into dusk. The milky way splashes across in silver and white – a smattering of light and relief in their spilt majesty. The sky cradles a waning moon.

Being here, it takes time to breathe at a slower pace; to let my belly soften and sink into my winter bones. I find myself in a world where it is becoming more difficult to disconnect from the goings on of humanity, my country, my community. There is a deep well within me of wanting to be free from the destruction, the war, and the suffering I have no control over. But then I realise for the millionth time that I control nothing. I can but try to go forwards in what seems to be the right direction. I can shepherd and steer myself, yet control does not belong to me. It never has.

I am finding myself enjoying growing older. Not only because I never expected to, but with the growth itself. I am assured as a human being, though never would I believe that I am particularly ‘good’ at any one thing, although I am on my way to becoming an exceedingly keen listener, and that itself is an art. 

Another art (and something I am not particularly good at) is writing. It is a pursuit I will never be great or even exceedingly good at. If I ever become half the writer I have yearned to be all my life, would that be a paragon of happiness? How am I ever to know if I am anything over than average unless someone tells me differently? And even then, can I bring myself to believe them? In all likelihood – not a chance.

With age comes wisdom and truth. Some are fraught with despair, while others have a far more convivial pulse. I remain unconvinced that absolute truths do not exist, although these things often come down to perception.

Breaking my bonds with the city, I ‘go within’ as Jacky calls it, and reach back into the folds of myself I have forgotten or allowed to lapse. I come back to breath, firing my body in the sun. My lungs expand; each lobe bristling with each seemingly bottomless breath. I readjust the way a spinnaker does downwind. Silence is my ballast.

As I come to see my senses as a decoy, I’m carried towards a deeper understanding of who I am, where I am in the world and how I came to be here. I temper my body, but do not become weary, and there is a far greater element of not needing answers – to embrace the mystery and come home. Should books and music, baths and tea, shadows on the wall from the moon, and the odd storm be all I had for company, I would want for nothing. For there is equanimity in the quiet, and peace in patience.

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Where in the world are you, Carmen Sandiego?

Life. It gets in the way. That’s why I haven’t blogged for three months because there’s been a lot going on. For the last month or so, I’ve been down with the lurgy (the flu), but after two courses of antibiotics, probiotics, lots of vitamins, good food and rest, I’m on my way to being back to full steam ahead with my year.

Exciting stuff is happening. I’ve been asked to be on the organising committee for next years Spiritual Care Australia conference which will be on the Gold Coast. As a pastoral carer who identifies as ‘spiritual’ but doesn’t belong to a specific faith group, I was so heartened to be invited. I am yet to make it to a meeting because I’ve been unwell, but I’ll make up for it in the months to come.

I cut my hair off last week. It’d been falling out at a rate of knots (ha), and having had it cut shorter, I seem to have stopped shedding. Just like that. It feels strange to be so short (yeah, I know it’s still long, but it was ridiculously long). I’m feeling … fresher. Yeah, that’s it. Fresher. Younger too, which is interesting considering I’m forty this year. I took this this photo after I rolled out of bed for my hairdresser. I know I’m looking a little grey.

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So, here is what’s been happening with me …

Making: Crocheting my first blanket. There will be crying Nicolas Cage style, fist pumping and gallons of tea. My maternal grandmother who taught me how to crochet when I was a little girl would be chuffed.

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Cooking: Chicken soup and green smoothies.

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Drinking: Tea. Endless cups of tea. And kefir. I cannot get enough kefir with a generous dash of honey and cinnamon.

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Wanting: A cabin in the woods/hinterland.

Looking: At cabin porn (there’s a theme emerging, yes?). Clouds at sunset, too.

Dreaming: About toasting marshmallows on the burn pile at the farm.

Playing: Diabetic Wheel of Fortune.

Deciding: What the fuck to have for dinner.

Craving: Sweet milky tea, liquorice and normal blood glucose levels (which are incompatible with liquorice)

Wishing: I was living in northern NSW. I feel between worlds. Or like I need a bridging visa or something.

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Pissed: That I caught the flu and it’s still affecting me a month later … Get the fucking fluvax, people.

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Enjoying: My growing collection of minerals. Or crystals, if you want to call them that.

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Waiting: On more words to come. I know they’re there.

Liking: The unfurling of cooler climes. It was a long, hot summer.

Wondering: If I will ever get this novel finished … #yesiwill

Loving: My new balcony chairs. They are epically comfy.

Considering: Spinning wool, falconry and starting my own religion. The latter would be far more lucrative.

Reading: ‘Norwegian Wood’ by Lars Mytting, ‘Gathering Moss’ by Robin Wall Kimmerer; ‘Konmari’ by Maree Kondo; ‘A Ted Hughes Bestiary’ and ‘Hildegard of Bingen’s Medicine’ by Doctors Strehlow and Hertzka.

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Buying: Nothing. I’m Konmari-ing the fuck out of my life. If it doesn’t bring me joy, it goes to charity.

Watching: I just watched ‘Dear Zachary’ and it made me want to cry forever and ever. It’s the most powerful film I’ve seen for some time and will leave you reeling (and needing therapy).

Hoping: That my friends Andrew* and Chief get donor lungs soon. They both have CF and  have had way too many false alarms which is cruel, disheartening and emotionally exhausting. IT’S A GOER FOR CHIEF ON THE SIXTH CALL UP! He’s doing *incredibly* well 🙂

Pondering: How amazing life is being clean. I never thought I could feel this happy. Seriously – have I EVER felt this way? Halcyon days 🙂

Marvelling: At how music makes me feel ALL THE THINGS.

Cringing: That my Jeep needs a new gearbox. Oh, the horror.

Needing: A capsule wardrobe.

Puzzled: That I don’t ever drink coffee in winter.

Questioning: Why so many crap writers get published. I guess mediocrity is on trend.

Smelling: Not much. Since having the flu, my sinuses have been blocked, but today my olfactory senses happily returned and oh! The smell of toast, freshly laundered sheets and chai simmering on the hob – glorious.

Following: My gut. And Marie Kondo. She’s rad.

Wearing: Mecca lip balm. I cannot get enough on my mouth.

Noticing: That I really need to clean my windows.

Knowing: My purpose.

Thinking: I have SO much to do.

Seeing: An overabundance of cranes across the city. All very phallic.

Believing: In fairies and the little people we can’t always see.

Admiring: Anyone who lives with a poo bag.

Believing: In karma. Because I have to.

Sorting: Through my possessions and giving a lot of stuff away. Liberating much?

Getting: Organised to launch a big community project that I can’t tell you about. It is super exciting and slightly terrifying knowing that a friend and I are putting ourselves on the line for what we feel is for the greater good.

Gathering: Resources and support for said project.

Cultivating: Kindness, candida (sexy, right? Thanks antibiotics!), and garden ideas.

Bookmarking: Where do I start? Psychedelics in dying, extreme knitting, cob houses and the small house movement, India, birds of prey & falconry, granny squares, aromatherapy, epigenetics.

Disliking: Where my neighbourhood is heading. Think big corporates moving in, mass gentrification and hideous high-rises that hopefully no one will want to buy. I foresee a glut.

Coveting: A spell that makes me write 10,000 words a day, knowing full well that no such thing exists. The only way is ass glue and a warm teapot within reach.

Opening: Bottles of kefir like they’re going out of fashion.

Giggling: At finding feathers at the most serendipitous of times. My mantra of ‘look up, look down’ has been serving me well.

Feeling: Ready to replant my garden with the help of Mum’s green thumbs.

Snacking: I wish it was medicinal liquorice, but it’s raw veggies with cottage cheese. Don’t knock it ’til you’ve tried it.

Helping: Shit stir the big developers who are trying to ruin my community and create change by lobbying, petitioning, opposing etc.

Hearing: Fleet Foxes and the noble chatter of crows.

Trying: To spend more time offline and in nature.

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(image from https://nostalgichobo.wordpress.com)

Thanks to Pip at Meet Me at Mikes for such a cool list 🙂

*Sadly Andy died a few months after I wrote this. He will be eternally missed.

The power of choice

I made a big decision yesterday. I decided that I no longer need my opiate antagonist therapy. I had planned to stop on my birthday, which just happens to fall on New Year’s Eve, but I’ve been feeling so happy and settled that I knew I could do it. And so I did. The ‘high’ from not having to take the bitter pills I’ve been placing under my tongue for two years was unexpectedly immense. I felt as though I could scale a mountain. I danced and howled at the fireworks that are barnstorming the sky every night before Christmas.

But then the night’s hands stretched towards midnight, and I toddled off to bed where the inevitable withdrawal symptoms began to kick in. I was hot, then freezing cold. I had restless legs and my arms were flailing uncontrollably, so I clamped them shut between my thighs and dealt with it. Because that’s what you do when you make a choice.

I woke up early this morning feeling like I could swoop into the sky with those long gone fireworks, but now I’m a little tired simply because I’m functioning on very little sleep. I don’t know how long these side effects will last – maybe a few days or longer – but they beat being reliant on any substance EVERY FUCKING TIME. I ate a hearty breakfast, downed a legal addictive stimulant coffee and with my full belly and happy heart, I thought I would sleep, but I’m feeling so free and alert that I had to write.

The last two years I’ve been on Buprenorphine have been some of the most memorable and active, simply because I wasn’t wasting my life getting high and sleeping my life away. I got shit done – lots of it – and last year was an incredible year that presented me with some life changing opportunities. This year has been a little more sedate, but just as fulfilling, if not more.

A couple of weeks ago, I had my last appointment with my addiction specialist and we decided that I would stop taking the ‘bupe’ on my birthday so I could start the New Year clean and fresh as a daisy. I won’t go into the specifics of my final appointment, but it was rich with poignancy. I will miss my doctor’s wisdom and his ability to be transparent with the realities about my state of addiction. He has been such a source of encouragement, and when I last saw him, we hugged and exchanged kind words. He also gave me a beautiful healing stone which I’ve added to my mineral collection (or crystals, if you want to call them that).

After ruminating about the supportive relationship with my addiction specialist, I realised that I had met one of the finest doctors who had ever treated me, and I’ve met hundreds – maybe thousands – of doctors. I’ve met doctors who shouldn’t be doctors, but this man genuinely knows how to care for his patients. He knows that their – our – lives are in his hands. He was one of the very few people I trusted to show my TEDx talk to prior to speaking on the day, and he had nothing but lashings of encouragement and praise. He’s the kind of doctor and human being you want as your doctor. He was in my corner from the start and I couldn’t have done it without him. Behold the healing stone …

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Peace. Joy. Liberation. THAT is how I am feeling today, and how I will continue to feel even through the flailing limbs and mad body temperature fluctuations. I will hold that feeling of pride close to me and that is how I will get through, because there is no other way.

I’m excited about a whole gamut of stuff right now, but I’m mostly excited that I can turn that bloody alarm off my phone that used to remind me to ‘dose’ at four-thirty every afternoon. No more alarms. No more bitter pills. No more lining up at the junkie counter at the chemist to be ‘dosed’.

I get to enjoy Christmas with my loved ones with no attachments, and while last year may be tough to beat (I had my sister back, and my parents, her and I danced the night away), I’m not out to break records. I’m here to live, love, be loved and give. It really is that simple. Yes, there have been deep feelings of shame I can attribute to my drug use (and lining up at the junkie counter), but like the scars on my body that whisper to me that I am a warrior, I’m more than happy to share my stories of how I have seemingly conquered my addiction to narcotics.

Now this may or may not interest you, but I’ve been reading a lot of peer reviewed papers and first hand experiences of how psychedelics are used in addiction therapy and to heighten spirituality with the dying. I’m more invested in how psychedelics are used with the dying, and while I wouldn’t do it myself due to the risks to cognitive function and the potential psychiatric issues, I’d probably give it a go if I was at the end of my life. While the potential for dependency is very low, what a ride it would be. Now have a look at this diagram:

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I don’t do alcohol, nicotine and my intake of coffee these days is practically non-existent in comparison to what I used to consume. Prior to transplant, apart from morphine, I would continuously suck on nitrous oxide (Entonox) when physiotherapy became too painful. It helped, but it can cause bleeding, so I was closely monitored and as such never had physio again due to uncontrollable pain. When I was dying, all that mattered was that I was comfortable from both a physical and spiritual standpoint.

Now take a look at where Psilocybin (‘magic mushrooms’), LSD and Mescaline are on the chart. Very low in dependency. It never seemed to hurt Jack Kerouac or Sir Ginsberg and their prolific writing. Until it did. A slew of writers ‘graduated’ to speed, benzodiazepines – and the rest – which inevitably lead to this: ‘Kerouac took so much amphetamine when he first discovered the inhaler high that he lost most of his hair and his legs swelled up with thrombophlebitis.’ Not sexy at all. So while it aided their art for a while, it swallowed them whole and Kerouac was dead at the age of 47. I am eight years away from 47 and do not want to die, so to think I was addicted to narcotics like morphine and pethidine horrifies me, because after heroin, they’re at the top of the list with both dependence and morbidity. Pentobarbital (often marketed as Nembutal) is right up there, too. Nembutal is the choice drug for euthanasia, and cocaine is not far behind.

I’ve spoken at length with friends who have tried all manner of substances over the years: ecstasy, methamphetamine, mescaline and LSD, heroin, morphine, cocaine, marijuana and alcohol. That’s right – alcohol is also on the list with a level of high morbidity too. Is this a cautionary tale about drugs? Perhaps.

So enough of the horror for me. Instead, I am going to try to not be horrified with how close I came to death when I was using, but will tap into the subtleties of that emotion when I need to feel proud. Did I win the fight against drugs? Did I win the fight against CF and cancer? Not quite, and for a couple of reasons. I’ve never particularly liked or understood the militarisation of illness or death, and I don’t plan on using that model for how I got through my addiction. I GOT THROUGH IT. And I got through it with support, love, the right medication, meditation, music, writing and fuck off stubbornness. I can’t say that I single handedly came through the other side without help, but I did most of the work myself because I’m not one to ‘lean in’ – I never have been.

Having an addiction specialist and a supportive family was one thing and while I only told a handful of my closest friends, they knew from day one that the only way I get through the really tough shit is on my own. I attribute that to spending so much time alone in hospital once my Mum had to leave so she could love and look after my sister and my Dad. Being alone gives you a tremendous sense of temerity and independence, as well as an imagination to rival Tolkein (although I was never going to be as crafty as he was – not even close).

I’ve never been codependent on another person, and I don’t know if that’s a good thing or not. More often than not, I’ve reasoned that it’s for the best because I’ve always wagered that I will live the rest of my life alone. Except that I’m not. I want to thank everyone for letting me just be. For still loving me. For asking how I’m going. For always asking and accepting that wherever I am, no matter what may be happening, ‘I’m fine, thank you’, even when I’m not.

Endnote: this is what I strutted – really strutted and danced – around the house to last night. Because I’m feeling good.

Why I’m NOT sorry

Today, my friend – the other Carly, Carly Findlay – wrote a shut up amazing piece about apologising and how she no longer wants to apologise for what is beyond her control. Shortly after reading Carly’s piece, I saw the photo Annie Leibovitz took of Amy Schumer in all of her near-naked and non-apologetic glory. I wrote the following on my chasing away salt water page:

I am loving this photograph of Amy Schumer by Annie Leibovitz for the 2016 Pirelli calendar. Beautiful and real, replete with her natural curves and belly. Amy writes on her Twitter account – ‘Beautiful, gross, strong, thin, fat, pretty, ugly, sexy, disgusting, flawless, woman. Thank you.’ No Amy, THANK YOU. 

As a woman with Cystic Fibrosis, I’ve always had a belly (even at 38kg) that I’ve been embarrassed about. Why? The way women who have won the ‘genetic lottery’ are portrayed in the media are partly accountable. Compare the 2016 Pirelli calendar to the 2015 one of highly fetishised shots of ‘supermodels’, and there’s another answer.

I stopped reading ‘beauty and fashion’ magazines many years ago for a couple of reasons. Firstly, there was no substance in the writing, and I felt that the articles were trying to dumb me down even though they carried the token ‘be empowered!’ bylines. They made me feel as though I wasn’t in charge of my life because everything from my personality to my body, my diet and the colour of my skin had to be curated to please others.

The images in these magazines come a close second. They are photoshopped and airbrushed to within a pixel of their life, which is not telling you anything new. Over the last year, I’ve been celebrating my body more and more because it is strong, capable and really fucking incredible. This body with it’s bi-afran belly and beauty marks (scars) has been through dozens of surgeries and survived. It took me a long time to accept – let alone be proud of – my scars, and while these surgeries have shaped me, they do not define me. My body is unique, beautiful, capable and tenacious and that’s something I celebrate every day.

Like Carly, it got me thinking that I’ve been apologising all my life for things that are beyond my control. A prime example is when I would have massive coughing fits for the twenty-one years before my transplant. I would be in a constant state of apology – always to the person next to me (especially if it was a boy) even when they would tell me I had nothing to be sorry about.

But what was I actually sorry for? For not being able to stop the brutal evolution of my dis-ease? For not being able to stop my lungs drowning in mucous where the only way I could get any relief from the crushing pain was to hack up green and brown slugs, or red if I had had a bleed?

I’ve been in bed with lovers and have apologised for my belly and my scars. The thing is – I know they don’t care because orgasms are more powerful than any mark on my body. My scars are a testament to my survival. I started calling them ‘beauty marks’ long ago, but I know that they’re just scars and most humans have them – just maybe not as many as I do. Men are told ‘chicks dig scars’, but I’ve never heard anyone say ‘men dig scars’. These indentations on my body represent my survivorship and they tell me – and others – that I am a warrior.

But sometimes there are apologies you have to make. I’ve done a lot of apologising over the last couple of years because I needed to say sorry to my family for lying to them about my addiction issues.

I was brought up with a fairly strict hand, replete with a really solid set of manners, and maybe that’s why I’m such a passionate apologist. I apologise a lot to men for no good reason, and as a society we’re conditioned to say ‘I’m sorry’ when someone dies. How about ‘that really fucking sucks – what can I do to help?’ Because you can always help.

I was talking to someone on the weekend about Facebook and how my personal presence on there is very small compared to what it used to be. Instead of having 800 ‘friends’, I now have about 80, and a lot of them are for my deathie work. The reason I deactivated my profile and had a ten month Facebook hiatus after I did my vipassana was because I had essentially turned into many of my Facebook ‘friends’ own private therapist.

I love helping people – it’s my passion and purpose – but when people would message me to help solve their problems, I would do the very best I could until I became overwhelmed and needed time out. Yes, I feel guilty when people work out who I am on social media (I use a pseudonym) and send friend requests which I decline, but I can’t be everything for everyone. I won’t say sorry – I’ll just say ‘no thanks’.

I spend time with my family and friends and I hold a sacred and sometimes all-consuming space for my patients and clients. I have learned to let go and learning that was not an easy lesson. By establishing boundaries, I’m happier and feel more secure than I ever have both personally and professionally, and while I have this blog, there are many facets of my life that remain private – things people will never know.

2016 will be my own year of no apologies because I’ve done the hard yards and have owned my shit. I hope this post doesn’t sound intentionally angry, but I won’t say sorry if you think it does. I’ve only ever been able to be aggressive assertive with doctors who have lots of letters after their names because I’m terrible – really terrible – at confrontation. I am, however, very assertive when it counts, like when I’m sick and I need to self-advocate. I’ve advised several mums who have children with CF to ‘get their bitch on’ because sometimes, that’s the only thing that works. Here is my anti-apologist pictorial*:

I will not apologise for not being afraid of my own shadow or loving rock and roll.

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I will not apologise for my pale skin or wearing a bikini with an imperfect body or the tattoo I have loved since I was 19. Or the vein mapping on the left side of my chest thanks to numerous DVT’s/clots.

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I will not apologise for loving minerals. Or rocks, or crystals if you want to call them that. They give me strength, make me feel grounded and bring me back into my body.

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I will not apologise for my bruises you CAN touch.

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I will not apologise for enjoying using firearms in a controlled environment. And besides, if you need any organs, I’m a crack shot.

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I will not apologise for NOT wearing makeup/face paint, or showing my vulnerability on the shittiest of days.

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I will not apologise for demolishing a ginger bread house come Christmas time.

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I will not apologise for only being able to draw rainbows and saying ‘fuck’ a lot. 

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I will not apologise for eating phallic themed desserts. Or any dessert, for that matter. Ok, ESPECIALLY phallic desserts.

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I will not apologise for being a bit of a hippie and banging on my Tibetan singing bowl. I love ritual and ceremony.

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I will not apologise for asking questions and seeking answers.

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I will not apologise for taking bathroom selfies in hospital clothes after I’ve spent time in isolation.

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I will not apologise for loving flowers. Any flowers. 

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I will not apologise for twirling. It’s my thing and sometimes it’s how I get through the day.

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I will not apologise for hugging the shit out of my best friends at every opportunity. Or hugging anyone I like or love. I will not apologise for public displays of affection. If I really like you, I’ll hold your hand and kiss you wherever and whenever the hell I want, and I’ll never be sorry for telling you how I feel. If I tell you that I like you, then I *really* do, and that’s called being very fucking vulnerable. I won’t apologise for that, either.

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I will not apologise for having a medical history that may scare you. It does not define me or my future, and if you can’t deal with stories about me at my ‘worst’, then you will never know me at my best.

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I will not apologise for being a secular chaplain who is spiritual and does not belong to a church. I belong to myself and the people I serve.

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I will not apologise for taking feet selfies, because they are my most redeeming feature.

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I will not apologise for writing every chance I get.

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I will not apologise for knowing my worth.

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I will not apologise for loving my nephews so much that sometimes it scares me.

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I will not apologise for my rad transplant scar and the free breast lift I got from Medicare (and my new vagina). They might be scars (I call them beauty marks), but they’ve made me into a FUCKING WARRIOR. So yeah, fuck ‘sorry’.

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*not an exhaustive list.

My summer of love

Earlier in the week, someone asked me what I’ve been up to. ‘Reading, writing, stuff …’ But mainly reading and writing, hanging out with my sister and my nephews, working, planning, walking and dreaming. It’s true – I’m an abject failure of a social butterfly, although I did actually go OUT Friday night to the opening of Brisbane’s The Soul Pantry – a fabulous florist in Newmarket you should visit if you live in Brisbane. I mean: TERRARIUMS. I am obsessed. Such a granny. 

It’s my favourite time of year. Yes, I love Christmas and will be trimming my tree (and the rest) this weekend, but it’s summer that truly has my heart. I had a passionate relationship with summer in my youth – days of water-skiing, inner tubing and swimming at my home on the Brisbane river; meditating on the pontoon at water level, and slathering coconut oil on my body to bake myself like a ham.

But then I had my transplant which meant no sun. Or, I could have sun, but with a family history of melanoma, my immunosuppression and my wish for eternal youth, I literally took shelter and have been alabaster ever since. It took about fourteen years for me to re-embrace summer and over the last couple of years, I’ve rebooted my brain and learned to adore what I call my ‘Summers of Love’ once again.

This calls for the following:

  • A new swimsuit and rashie √
  • Bebel and João Gilberto on repeat √ (and Enya – don’t judge me. Did you know she has a new album?) √
  • The radio tuned to ABC classic FM  √
  • Naked cooking, naked dancing, naked writing. Okay – just entire days spent totally naked √
  • Admiring the lights of the city – sometimes with clothes on – hoping no one has binoculars trained in my direction √
  • Writing on my balcony, watching and listening to the birds flying just out of my reach while the sun sinks behind the mountains √
  • Scratching words together for my novel √
  • Watching ‘Love Actually’ & ‘Eat Pray Love’ (and crying a lot) √
  • Late afternoon wandering by the river √
  • Stealing the swing from unsuspecting children at the park √
  • Coming to the realisation that a whole year has passed and I HAVEN’T KILLED A SINGLE PLANT √
  • Reading Les Murray’s latest collection √
  • Thoughts about new balcony furniture (Keren Brown, I am looking at you) √
  • What-the-fuck-am-I-going-to-cook-for-dinner mania √
  • Clandestinely skinny dipping in the pewl come twilight  √
  • Mangoes, mangoes, mangoes √
  • Sunscreen. All day, every day √
  • Make friends with salad. Yeah, not convinced unless it’s covered in five types of cheese.

And so that is my glamorous life. I got all of the stuff I love and adapted it to my post-transplant, no sun life. November has been a pretty sedate month, and December is looking distinctly unremarkable. But I like unremarkable and ordinary and as much as I’d love to be in Barcy now, that trip will have to wait until another time. 

My novel (set in the outback in the early 70s) is coming along (1200 words today – take that, Hemingway), an epic and covert poetry project is beginning to take shape and I’m working on a short story. I never write short stories, but the last one received a great review in the Sydney Morning Herald, so this in itself is miraculous.

I turn 39 on New Years Eve, and as with every birthday, I have no idea what I’m doing. Big changes can happen between now and then, but I seem to always escape to the country for my birthday. Last year, I spent a very sedate birthday at my folks beach house at Mooloolaba, and the two years before that, I stayed at my friend Nic’s farm in the hinterland of Byron Bay where we did we got our witch on and burned shit. Going by the year 2014 turned out to be, I can say that burning shit GETS SHIT DONE. I highly recommend it #manifestinglikeamofo

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I’ve never spent a NYE at my place in the city and don’t know if I ever will. I feel in limbo with its frenetic pace – almost as though I’m shackled – whereas out ‘there’, whether it be Barcy or the farm or the beach, I am unencumbered and free. 

Waking up in the quiet of dawn and going for a surf on the first morning of a new year is such a gift. There’s nothing that quite matches its intensity or sense of calm. Bobbing in the ocean for while, eating a solid brekkie, sinking into a good book, doing some writing of my own and going for a wander is my ideal. Simple, yet ideal.

But first I have get through Christmas, which isn’t to say that I ‘endure’ the festive season. Quite the opposite, in fact. I love getting my yule on and buying gifts for my nearest and dearest. I’m in full blown love with my new baking fruitcake tradition to the point where I’ve now had my fruit mix soaking in rum for ten days. When the weather cools down, I’ll bake. 

As I type, it is 6.27pm. Cicadas embroider the air which will forever take me back to the vipassana I did in 2013. There’s the odd siren, barking dog and the bristle of leaves in the evening wind.

Over the next couple of weeks, my opiate antagonist therapy will whittle down to zero, so I’ve been thinking of how I can celebrate this milestone. I don’t drink, so I’ll most likely keep things unremarkable and ordinary, write down some words and walk along the river. I’ll open my arms up to the world like the protagonist in my novel did today and feel the salt building on my skin. Salt is something I’m quite fascinated by, and not just because it grows in little mounds on my skin in summer that I can season my fish and chips with.

While I have a humanities brain, I find the  chemical breakdown of salt fascinating and  beautiful. On their own, sodium and chloride are highly toxic. But when they come together, they create something really special. Salt is stable, non-reactive and compatible with life. Salt gets a lot of bad press, but on a hot day like today, I’ve gobbled down no less than fifteen salt tablets because I lose excessive amounts through my skin as a CF’er. Where you might have to cut salt out of your diet, I can dump it on my food in excessive quantities. Without it I become hyponatremic which can be fatal, but that’s enough histrionics for today.

Being able to be completely free of Suboxone is going to be absolute freedom. I’ve not had one craving for anything drug related since I started on the therapy in 2013, and that alone lends me a steady strength. Back when I first started lining up at the chemist at the junkie counter, I knew I had my addiction cornered. There wasn’t a part of me that didn’t want to be free from the slavery that is addiction and I knew that I would get here. How did I know? Because once I make my mind up about something, I get it done. Whether that’s being stubborn or just being really fucking determined, I’m not sure. Maybe it’s a potent mix of both. Knowing I had this beat from day one was essential for my recovery, and the day I take my last dose may be unremarkable and ordinary, but as I’ve always maintained, there is great beauty in the ordinary. Even when you can’t see it, it is everywhere. If you don’t go in search of magic, love or anything else you want in life, you will never find it. The Japanese philosophy of wabi-sabi is deeply rooted in revering nature, the everyday and its imperfections. It’s a state of heightened consciousness where there is beauty hidden in how you experience the world in its state of constant transience. The Buddhists were really onto something with their reverence for impermanence, so I urge you to embrace your wabi-sabi. If that’s not enough, then maybe some Roald Dahl will do the trick:

‘And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don’t believe in magic will never find it.’

 

The night I lived again: part two

By the time it was definite that the donor lungs were a match, there would have been at least thirty-five people at the hospital – all friends and family. Even a friend’s boyfriend (now husband) had driven down from uni at Gatton, so he could be there for both me, his now wife and my other friends (love you, Davey!)

My boyfriend at the time, bless, had arrived at the Prince Charles drunk. With flowers and chocolates which I couldn’t eat. I think they became someone’s breakfast. He had been having a night in with the boys at his place, and they all very quickly sobered up when I arrived by ambulance. In fact, most people had beaten ME to the hospital. My Dad ran about three red lights and my best friend ran at least one.

I was taken up to the respiratory ward and we waited in the day room for a couple of hours before I was put in the wards only private room. The only problem was, with the amount of people I had with me, there was a fair bit of noise and it was now around 1.30am. We kept on getting in trouble from one particular nurse who reminded me of Maggie Kirkpatrick’s character on ‘Prisoner’. Or Nurse Ratched. She could get as angry as she wanted, because I soon discovered that she was going on six weeks of leave when she left handover that morning.

Carly: 1

Nurse Ratched: 0

You do silly things when you’re about to die like putting vomit bowls on your head.

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I got to say my goodbyes to each of my friends, one by one, and it was excruciating, both physically and emotionally. My friends held me so close – I remember my friend Tammy especially – and the pain was almost unbearable, but I wanted to do it. Parents of friends who lived in Melbourne brought up prayers and messages for me, and while I was grateful, I was too sick to give any sort of response, except for ‘thank you’.

I was told to ‘have a sleep’, but I wanted to spend as much time with my family, my partner and my friends as possible. And so, around 8am on the 22nd August, I was taken to theatre. The distress is so palpable on my sisters face, you can almost touch it.

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If there is a photograph to capture my most life defining moment, this has to be it – saying goodbye to my sister. So many goodbyes that morning.

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I hugged my parents and my sister, kissed Lachie goodbye and was wheeled away.

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All night and all morning I had been at peace. I wasn’t particularly worried and at one point, I’d had to tell everyone else to calm down. But when the orderlies began moving my bed in the opposite direction of my family and friends, I lost it. Up until then, I hadn’t been too worried – a possible combination of morphine and the desperate yearning to have my old lungs taken out of my decaying body. I wanted the next moment more than the last, and while my body couldn’t fight for it, my mind could. But then my brain broke. Split open like over ripe fruit.

I don’t know where the sound came from, but as I was being spirited away, I looked at the people gathered behind me and I wailed. My body was wracked with sobs because I had finally realised that I may never see any of these people again. I could die on the table (that’s another story) or I could make it through the surgery, get out of theatre and into recovery, only to die.

My friends subsisted on chocolate, cigarettes and a carload of Maccas when I was sleeping. Cigarettes. The irony has never been lost on me. Inside the O.R was (as all O.R’s are), subarctic. I was covered in foil to maintain body temperature and given warm blankets as I lay there waiting to go to sleep. I had beautiful conversations with doctors and the nurses and they were able to get me into a state of repose where I even asked the surgeon if I could have a couple of 500ml bags of saline popped into my chest

The Propofol leaked through an intravenous line in my chest, and I happily surrendered to the milky white liquid like a little death. My last words? ‘Save me, for I am the Sex Goddess.’ ‘Sex goddess’ had followed me through high school as a nickname, except I didn’t have sex until after I’d left school. But ‘sex goddess’ it was. The theatre big me a collective ‘good night’ and ‘of course you are’.

Here are a few of Alicia’s brilliant photographs while I was having my transplant. I would encourage you to click on these photos so you can see the more minute details. Below, the surgeons are suturing up my clamshell cut after six hours of surgery. Little did they know that they’d have to rip their delicate embroidery apart when I had to be taken back to theatre because I was bleeding.

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Surgery

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In recovery. Alicia snapped at the *exact* moment my anaesthetist realised I was bleeding internally, so it was back to theatre to resolve some ‘plumbing’ issues. It pulls on my heart when I see the nurse holding my hand. It’s the little things that for me, mean so much, and I know my family would have appreciated the comfort she was giving me, even though I was in a coma. It’s the whole ‘show, don’t tell’ mantra that writers use, or ‘demonstrate, don’t state.’ And in this gentle gesture, this is exactly what she was doing.

And so this time seventeen years ago, I was dying. I am just a few hours away from getting ‘the call’. I get a little introspective on Transplant Eve, but tonight I’m writing. Fitting  seeing as how writing has played such a big role in my survival. I’m having a quiet celebration with my folks tomorrow where we will toast my donor and her family. We will toast my heroes; so many peoples heroes.

Part three of my transplant journey will be with you sometime tomorrow.